Also should now be linking POTS and EDS with another CSF....... CerebroSpinal Fluid Leak! After finally being diagnosed with a CSF Leak and getting blood patches, I am finally seeing improvement with my POTS symptoms!
The MS patients I know who have had this procedure performed have had to have the procedure done over and over again...you could not pay me to have this crap done!!! I've had MS since I was 13 and am 53 now, diet has helped a lot but sure wish my Neuro had believed in diet when I was a teen. I can walk with a cane and an arm of the w.c for long distances. I hope more Neurologists first recommend that their patients have this blood test or use the elimination diet...that makes a huge difference. My balance has been gone since I was 25 but I can live with that...I have to. Wake up doctors!!! Start with diet!!!
Very informed and nice to put EDS POTS Syndrome and CFS together ME may also have a place here . Pots Syndrome can be fainting but very rare some people started fainting but then it turns into Pots seizures, my daughter has these seizures also has EDS and CFS all started at 15 years old now in a wheelchair.
Hi Camille! We don't have any direct contacts with docs in Arizona, but that is not to say there are no docs available to you! We recommend contacting Barrow Neurological in Phoenix (as they have had two Chiari neurosurgeons at the institution in the past, who have moved on). While we are runaway of the current specialists there, it never hurts to call and ask for either information or even a reference to a well-versed physician closer-by!
camille jackson I would advise you to join a support group on fb for syringomelia. I have looked it up and there are various available syringomelia groups.
In the UK Ivabradine (Procorlan) 5mg is used people with Asthma can use this . This drug lowers the heart rate just by a few beats and it goes with Midodrine nicely It has improved my daughters Pots Seizures instead of every day for hours on end it is now down to 30 minutes one seizure once a month and in August she flew to Ireland one hour flight from Newcastle in England. Felt bad going up but had a seizure later that evening for 30 minutes and no seizure on return flight or after the flight.
![Digital Circus Episode 4 [TRAILER]](http://i.ytimg.com/vi/abZtsmMUbJo/mqdefault.jpg)
Also should now be linking POTS and EDS with another CSF....... CerebroSpinal Fluid Leak! After finally being diagnosed with a CSF Leak and getting blood patches, I am finally seeing improvement with my POTS symptoms!
Kristin Ann how are your symptoms now?
The MS patients I know who have had this procedure performed have had to have the procedure done over and over again...you could not pay me to have this crap done!!! I've had MS since I was 13 and am 53 now, diet has helped a lot but sure wish my Neuro had believed in diet when I was a teen. I can walk with a cane and an arm of the w.c for long distances. I hope more Neurologists first recommend that their patients have this blood test or use the elimination diet...that makes a huge difference. My balance has been gone since I was 25 but I can live with that...I have to. Wake up doctors!!! Start with diet!!!
Very informed and nice to put EDS POTS Syndrome and CFS together ME may also have a place here . Pots Syndrome can be fainting but very rare some people started fainting but then it turns into Pots seizures, my daughter has these seizures also has EDS and CFS all started at 15 years old now in a wheelchair.
I am looking for a syringomyelia doctor in Arizona. Any help is appreciated. Tried googling and could only find pediatric specialists. Thank you!
Hi Camille! We don't have any direct contacts with docs in Arizona, but that is not to say there are no docs available to you! We recommend contacting Barrow Neurological in Phoenix (as they have had two Chiari neurosurgeons at the institution in the past, who have moved on). While we are runaway of the current specialists there, it never hurts to call and ask for either information or even a reference to a well-versed physician closer-by!
camille jackson I would advise you to join a support group on fb for syringomelia. I have looked it up and there are various available syringomelia groups.
Banner hospital in Tucson Arizona. Also get a standing MRI.
In the UK Ivabradine (Procorlan) 5mg is used people with Asthma can use this . This drug lowers the heart rate just by a few beats and it goes with Midodrine nicely It has improved my daughters Pots Seizures instead of every day for hours on end it is now down to 30 minutes one seizure once a month and in August she flew to Ireland one hour flight from Newcastle in England. Felt bad going up but had a seizure later that evening for 30 minutes and no seizure on return flight or after the flight.
Milk sensitivity - eosinophils
I believe due to the relationship between EDS & MCAD & MCAS " mast cell activation disorders